I am feeling a little introspective tonight, so much of my life seems to be in-between things at the moment, it’s almost as if I have been put on pause, and I have no control over when the play button is next pressed.
It applies to my health, I have been on methotrexate (chemotherapy) for over three months now, and prednisone (steroid) for over two, and yet I honestly and unfortunately feel no improvement, if anything things are worse. My hands are wrists have been a little less painful, but only as long as I wear my splints. My hip is now in constant high level pain, which increases the minute I even walk slowly, meaning I have to use the crutches I bought to get anywhere, and the range of movement in that joint is reduced by around 50%. My shoulders ache and it feels as if the bones are rubbing against each other if I move or try to lift anything. I see my rheumatologist on Tuesday, it seems the plan is to add in plaquenil (hydroxychloriquine) alongside the other meds. This too takes up to 3 months to have an effect, so more waiting.
My job is in limbo. Alongside the pain and mobility is the ever present and debilitating fatigue, which means unless/until the medication change works I am unable to return to my job, support my team, and earn a salary.
And lastly of course this applies to my accommodation. I am currently in a “bedsit” as an emergency stop gap until a suitable private let or council property comes up for me & my cats.
I suppose with all of that it’s natural for me to feel unsettled, I checked the definition of limbo, and being fascinated by language was also interested in the etymology:
1. uncertain period of awaiting a decision or resolution; an intermediate state or condition.
2. Late Middle English: from the medieval Latin phrase in limbo, from limbus ‘hem, border, limbo’.
It certainly has the meaning I want to convey, the uncertainty and waiting feel very real. But I actually took comfort from the etymological origin, namely the word ‘border’.
Waiting and uncertainty seem uncontrollable and make me feel somewhat anxious, as we often all do through periods of change. However being at the border seems different, somehow more exciting. It suggests new horizons and journeys to come, a future that has yet to be written and so by its very nature is filled with possibility. I can almost feel the horse beneath me as I ride for the border, grinning into the wind!
So be aware limbo, I do not intend to inhabit you for long! Now where did I put my riding boots…..
singlerheum 
We, who are border outlaws, define new territory each day, each new drug, each obstacle overcome. We live with ever-changing new normals in uncharted territories, waging a war against that which makes war on our bodies. And we do so while struggling to remain true to who we essentially are: Every-day miracles.
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Wow. Your symptoms are very similar to what mine were last year, with a few exceptions. The most noticeable symptom at first was upper arm/shoulder pain. The muscles felt like I did an hour long work out, just a constant deep ache. Along with that, fatigue. Horrible fatigue where I felt like I had concrete blocks tied to my body while walking through a mud pit. Then the low back pain started, followed by hand/wrist/elbow/foot. My wrists/hands always had a burning, aching feeling that never seemed to go away.
The only abnormal labs were my RF, which was over 500. I started on Plaquenil which did help a little, but after a few months I started MTX pills. Over the last year, I’ve had two increases with my MTX. I’d feel better for a little period after each increase, but the symptoms would always come back. It was hard to be patient with my rheumatologist. I just wanted immediate relief and wanted to get my life back on track.
I had a pretty horrible spring and it began to impact my emotional well being. Like you, I reached the point of “enough already” and was prepared to argue for changes. Thankfully, I didn’t need to, my doctor recognized that I wasn’t doing well and made changes. She also investigated things further and identified that I have severe OA and RA in my neck and severe OA in my low spine. We aren’t treating for that yet, because I feel I can handle that on my own for now, but she became very compassionate once she saw the xrays. I guess she needed to see the proof in order to truly believe me? IDK. I’m just grateful things are getting better on my end.
The best advice I can give you is keep doing your research, keep talking to others who have the same illness, and keep advocating for yourself. Push yourself when you can, but listen to your body when you need to, and rest when you must. Do whatever you need to do to keep your mind occupied, because it’s so very easy to slip into a dark place when you are dealing with so much never ending pain. And reach out to others who understand!
Good luck!!
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Thanks Kim, I totally agree that both reaching out and self advocacy are so important! X
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